Registry for Malignant Peripheral Nerve Sheath Tumors

This study is creating a worldwide database to better understand Malignant Peripheral Nerve Sheath Tumors (MPNSTs), especially those linked to Neurofibromatosis type 1 (NF1). Researchers are collecting information like tissue characteristics (histologic), immune markers (immunohistochemical), and genetic details (molecular) from patients with MPNSTs. They hope to find new patterns in how these tumors develop and behave. You can join if you have been diagnosed with an MPNST and agree to share your information. The study aims to collect data from 1050 participants over 10 years to learn more about MPNSTs.

Study design
This is an observational study, meaning researchers are collecting information without giving any specific treatments. It aims to enroll 1050 participants.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The study will collect information on your tumor's characteristics for up to 10 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03141021

Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

Recruiting
Not specifiedAll AgesObservational
Washington University School of Medicine
~1,050 participants
Updated 2026-03-09 on ClinicalTrials.gov

At a glance

Recruiting sites
4 of 13 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST)
Measured over 10 years
+5 more outcomes measured
Malignant Peripheral Nerve Sheath Tumors

NCT03141021

Where you'd take part

This study runs at 13 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Johns Hopkins

    Baltimore, Marylandstudy coordinator listed

    Recruiting

  • Memorial Sloan Kettering Cancer Center

    New York, New Yorkstudy coordinator listed

    Not yet recruiting

  • Mount Sinai

    Toronto, Ontario, Canadastudy coordinator listed

    Recruiting

  • Nagoya University Hospital

    Nagoya, Showa Ward, Japanstudy coordinator listed

    Recruiting

  • National Institutes of Health (NIH)

    Bethesda, Marylandstudy coordinator listed

    Not yet recruiting

  • Washington University School of Medicine

    St Louis, Missouristudy coordinator listed

    Recruiting

  • Dana Farber Cancer Institute

    Boston, Massachusettsno site contact published

    Withdrawn

  • Global Gene Corporation

    Mumbai, Indiano site contact published

    Completed

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Angela Hirbe, M.D., Ph.D. · PRINCIPAL_INVESTIGATOR · Washington University School of Medicine

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Eligibility criteria

Inclusion

Any patient diagnosed with an MPNST is eligible for enrollment to this registry provided s/he consents to participate (or consent form his/her parent or legal guardian or legally authorized representative is obtained).
  • Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

  • Immunohistochemical characteristics of malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

  • Molecular characteristics of malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

  • Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

  • Treatment given to patients with malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST

  • Future genomic characterization of malignant peripheral nerve sheath tumor (MPNST)10 years

    -The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST